ASAN to Protest Autism Speaks in DC (November 3rd)

On Saturday, November 3 (unfortunately there was a little confusion over the correct date; this year the walk and protest will be on the 3rd) the DC Metropolitan Area Chapter of the Autistic Self Advocacy Network will be leading a protest of Autism Speaks’ “Walk for Autism.” The protest is meant to draw attention to Autism Speaks’ hypocrisy, and its sensationalistic and exploitive fundraising tactics. Complete information about the protest can be found on the event’s Facebook page. If you are in the area and would like to join us, we look forward to seeing you there.

Join Us in Speaking Out Against
The DC Autism Speaks Fundraiser Walk
Saturday, November 3, 2012
8:00 am to 12:00 pm
On the National Mall between 14th and 15 St on Madison
Washington, DC
http://goo.gl/maps/EH0dZ

In 2010, The National Walk Now for Autism raised over $750,000 from Washington, DC metro area families and business. In 2011, only one Family Service grant, according to Autism Speaks' 2011 990, was given to a DC metro area business for a total of $19,640. This means for every $1 Autism Speaks removed from our community, only 2.6¢ came back to help Autistic people and our families in the Washington, DC area.

It is time to stop their removing money from our community and all local communities!

It's time to make our voices heard!

Autism Speaks continues to use fear and stigma about Autism to raise millions each year. Yet, they still have not appointed one Autistic person to their Board of Directors. As a result, each year, they continue to pour more money into research with no effect to the real needs of Autistic people living today. It's time to stop the single-sided Autism agenda!

Very little money donated to Autism Speaks goes toward helping Autistic people and families. - Only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. While 44% of its budget goes toward research, only a small percentage of this research is aimed at improving the quality of life of Autistic people. Most of the research that Autism Speaks funds is devoted to causation and "prevention."

Autism Speaks talks about us without us. - There is not a single Autistic person on Autism Speaks' Board of Directors or in its leadership. Autism Speaks is one of only a few major disability advocacy organizations which refuses to include a single individual with the disability it purports to serve on its board of directors or in anything more than token positions within its ranks.

Autism Speaks' fundraising strategies promote fear, stigma, and prejudice against Autistic people. - Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of Autistic people. Autism Speaks' advertisements and "awareness" campaigns portray Autistic adults and children not as full human beings, but as burdens on society that must be eliminated as soon as possible.

Autism Speaks is not financially responsible. - Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world: some salaries exceed $400,000 a year. Its fundraising expenses exceed spending on most of its core programs, and Charity Navigator rates its financial health as 2 out of 4.

Very little money donated to Autism Speaks goes toward helping Autistic people and families. - Only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. While 44% of its budget goes toward research, only a small percentage of this research is aimed at improving the quality of life of Autistic people. Most of the research that Autism Speaks funds is devoted to causation and "prevention."

Autism Speaks talks about us without us. - There is not a single Autistic person on Autism Speaks' Board of Directors or in its leadership. Autism Speaks is one of only a few major disability advocacy organizations which refuses to include a single individual with the disability it purports to serve on its board of directors or in anything more than token positions within its ranks.

Autism Speaks' fundraising strategies promote fear, stigma, and prejudice against Autistic people. - Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of Autistic people. Autism Speaks' advertisements and "awareness" campaigns portray Autistic adults and children not as full human beings, but as burdens on society that must be eliminated as soon as possible.

Autism Speaks is not financially responsible. - Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world: some salaries exceed $400,000 a year. Its fundraising expenses exceed spending on most of its core programs, and Charity Navigator rates its financial health as 2 out of 4.

Autism Society of America, 145K in total grants, per their IRS form 990 in 2011; approx 4% of expenses, per the link above:

Autism Speaks 2 M in total family service grants, per their IRS form 990 in 2011; approx 4% of expenses per link and quote below on questions and answers about the form 990; the most amount donated to family service grants of any autism advocacy organization in the US, per available IRS form 990's.

In 2011, Autism Speaks greatly expanded its family service efforts, awarding Family Service Community Grants totaling $2 million. These grants provide funding to build the field of services for individuals with autism and expand the capacity to effectively serve the autism community. Thirty organizations were awarded community grants in the U.S. and 27 organizations in Canada. (Canadian operations are not included in Autism Speaks’ US tax return.) Programs were funded in the areas of education, recreation and community activities, and young adults and adult services. Grants were also awarded to summer camps so that financially disadvantaged individuals with autism may attend. The program provided funding to more than 300 campers at 47 camps. Autism Speaks also manages AutismCares, a group of several autism organizations that provide funds to families affected by autism to cover costs associated with critical living expenses or to deal with the aftermath of natural disasters such as floods or hurricanes. In 2011 AutismCares awarded $79,000 to 182 families throughout the United States. Since Fall 2007, Autism Speaks has awarded over $5 million through its family services grant programs.

Quote and link from Autism Speaks answer to the autism community that they are not funding a prenatal test for autism, along with many other issues that are clarified and addressed in the linked interview with Autism Speaks, including an apology to those in the autism community that may have been offended in the past from the organizations efforts, and in addition, clarification of what the organization defines as cure:

"4. A growing body of scientific research suggests that we are rapidly nearing the development of an amniocentesis test to detect autism, much like the procedure currently used to detect Down’s syndrome. Does funding provided by Autism Speaks in any way enable the development of such a test? If a prenatal test for autism was developed, does Autism Speaks believe that it should be made available to the public?

A: Autism Speaks is not funding any research to develop a prenatal test for autism. That is not our goal. The genetic research Autism Speaks has funded is aimed at finding biological causes, as described above."

In the quote, and pie chart from the linked article below only 16% of Autism Speaks research analyzed in 2010 was funded for causation/prevention per risk assessment research funded. 0% was identified as funded toward a prenatal test. The majority of the funding for research was targeted for a positive impact in the lives of individuals on the spectrum.

"An evaluation was conducted on the first 107 Autism Speaks science grants that were completed by the summer of 2010. Eighty-two percent were judged to have provided novel discoveries that break new ground in autism research, 13% were judged to have extended previous findings and only 5% were considered to have negative results. (The complete results of the evaluation are available in the science section of autismspeaks.org.)

The grants were also evaluated from another perspective: What type of impact on people's lives did the research have? Our science portfolio encompasses addressing what causes autism, what occurs in the body that translates into autism, how can autism be diagnosed, how can autism be treated and how can we make sure the full autism community knows what was learned.

The Autism Society of America that ASAN endorses and does not criticize on their fact sheet has one active member disclosing a diagnosis of Aspergers syndrome on their board of directors. Autism Speaks has 11 members on their board of directors with a child with an autism spectrum disorder. The Autism Society of America has one parent reporting children with an autism spectrum disorder and one parent reporting one adult son with an autism spectrum disorder, per the ASA website bio's of their board of directors. Autism Speaks Board of directors discloses this information in the bio's on that website as well.

It can be perceived as disrespectful to a prominent member of the Autism Community, John Elder Robison, who is a college instructor in a related field, as well as an active participant in autism research, qualified for his position on the Autism Speaks Scientific Advisory board, to suggest that his position is a token one within the ranks, as he has provided a valued contribution to Autism Speaks direction toward an expansion of research needs across the spectrum. .Autism speaks has always been careful to use people first language in describing the disability/disorder of autism. ASAN suggests in the fact sheet that autism speaks is attempting to portray autistics as individuals that must be eliminated from society, when the Autism Speaks organization portrays the disability/disorder as an issue separate from the unique individual who has the disability/disorder.

The Autism Speaks Organization has never described any person as a burden; it cannot be quoted anywhere as it does not exist. Autism Speaks refers to the burdens that the organization hopes to lift associated with Autism Spectrum disorders, included co-morbids associated with the disorders that are severely incapacitating for many individuals on the spectrum, and the loss of the ability to communicate for those with the described condition of regressive autism, that inspired the organization's founder to start the organization.

Autism Speaks responded to offenses at those negative portrayals of the past and portrays happy children in almost all of their current public service announcements as well as on their website, as is evidenced with a search on those PSA's for the current year. The serious nature of the issue is still described in their PSA's and the Website, but it is a serious issue, that warrants the level of concern expressed through the marketing efforts of autism speaks, for many individuals on the spectrum as well as their families and friends.

All three national autism advocacy organizations, Doug Flutie Jr. Foundation, Autism Society, and Autism Speaks, rated by CharityNavigator receive identical star ratings with 2 out 4 in financials, 4 out 4 in accounting and transparency, and an over all rating of 3 out 4 stars in meeting or exceeding standards met by all other charitable organizations rated by the Charitynavigator.org site, as linked below for all three organizations.

Autism Speaks CEO is paid at or below the median compensation for CEO's of similar large sized charitable organizations in the Northeast, per the Charity Navigator's most recent 2010 analysis of CEO compensation, per the quote and link below. Note: the Charity Navigator organization does not include benefits as part of compensation in their analysis of compensation.

Per link and quote below, in the 2011 IRS 990 form Q&A section, Autism Speaks has a formal compensation structure in place that is based on geography and typically the median or 50th percentile of the market data of similar-sized non-profit organizations; the organization is evidenced as meeting the requirement of that formal compensation structure, as evidenced above.

"How do you determine your executive pay?It is the goal of Autism Speaks to pay competitively in the nonprofit health and human services sector in order to attract and retain top talent who will fulfill the mission and achieve results. A formal compensation structure is in place that is based on geography and typically the median or 50th percentile of the market data of similar-sized nonprofit organizations. The compensation structure is linked to Autism Speaks' performance system. Autism Speaks compares the compensation of its highest compensated employees to like positions in other non-profit organization of similar size. Such comparisons reveal "

Thanks aghogday. It's always an education in patience and tenaciousness to see you go digging for evidence like this.

It would be nice to see a response from ASA or ASAN addressing these discrepancies, and explaining how they can continue promoting this criticism - because it appears to be without justification.

You are welcome. The "ASAN vs.Autism Speaks" controversies have been an unfortunate divisive factor in the autism community. The ASA already works with Autism Speaks in collaborative efforts and gained a working relationship with ASAN earlier in the year in support of concern over the DSM5 criteria for ASD. I think that is a good thing, and was encouraged to see ASAN finally collaborate with an organization that falls under the "parent influenced" autism advocacy organization category as well as the general "cure ideology" category supporting research for remediation of some of the challenges on the spectrum, including co-morbid health related challenges, that some on the spectrum face on a day to day basis.

I attempted several emails to the ASAN organization months ago to discuss the issue with them, but the emails were ignored. Eventually an ASAN board member contacted me by email and told me that the staff members were too busy to respond to constructive comments, because of understaffing. This ASAN board member advised me that the Autism Speaks "fact" sheet that was posted on the ASAN site for months would disappear in September, which it did, however, unfortunately it continues to be used by some identifying themselves associated with the ASAN organization in what appears to be a continuing attempt to use the "fact" sheet to reduce the credibility of the Autism Speaks organization. The ASAN board member indicated that they had advised the staff against using some of the comments on the fact sheet, but the board member indicated they were not in a position of authority to enforce any changes. I still have a record of that email traffic, in case anyone from the ASAN organization wishes to dispute this comment, in private communication.

There were plenty of things to criticize Autism Speaks about in the past, including endorsing the vaccine autism connection myth, horrible portrayals of autism in their advertising that was using fear of the parents to promote themselves etc. However, I haven't seen any of that recently and I think Autism Speaks has apologized for those portrayals in their advertising. I think the last incident was the "I Am Autism" video.

Absolutely - I don't think it's an exaggeration to say they fumbled the issues very badly and made a complete mess of their PR - and they're still paying for that.
But it just gets somewhat tedious seeing the same old stories about euthanasia etc and the other long debunked stuff still being thrown around like they were the absolute truth.

For the record: I am simply more interested in seeing the truth of the matter, whatever form that may take, than seeing these ghosts of false stories floating around.
If the people promoting them believe they have evidence to support them, then it would only be rational to show it.

For the record: I am simply more interested in seeing the truth of the matter, whatever form that may take, than seeing these ghosts of false stories floating around.If the people promoting them believe they have evidence to support them, then it would only be rational to show it.

It would seem to me that you have already decided on what is the truth.

Autism Society of America, 145K in total grants, per their IRS form 990 in 2011; approx 4% of expenses, per the link above:

Autism Speaks 2 M in total family service grants, per their IRS form 990 in 2011; approx 4% of expenses per link and quote below on questions and answers about the form 990; the most amount donated to family service grants of any autism advocacy organization in the US, per available IRS form 990's.

In 2011, Autism Speaks greatly expanded its family service efforts, awarding Family Service Community Grants totaling $2 million. These grants provide funding to build the field of services for individuals with autism and expand the capacity to effectively serve the autism community. Thirty organizations were awarded community grants in the U.S. and 27 organizations in Canada. (Canadian operations are not included in Autism Speaks’ US tax return.) Programs were funded in the areas of education, recreation and community activities, and young adults and adult services. Grants were also awarded to summer camps so that financially disadvantaged individuals with autism may attend. The program provided funding to more than 300 campers at 47 camps. Autism Speaks also manages AutismCares, a group of several autism organizations that provide funds to families affected by autism to cover costs associated with critical living expenses or to deal with the aftermath of natural disasters such as floods or hurricanes. In 2011 AutismCares awarded $79,000 to 182 families throughout the United States. Since Fall 2007, Autism Speaks has awarded over $5 million through its family services grant programs.

So autism speaks state that 2011 was an exceptional year. They doubled their spending on the autism community compared to 2008, 2009, 2010.

Well BRAVO and let us hope that the amount keeps increasing year on year as $2million is still a tiny fraction of the $50+million that they took in last year.

I wonder what caused this change of heart. Maybe it was ASAN'S vociferous protests damaging their carefully honed image!
I certainly cannot see any reason to let up on the protests just yet, we wouldn't want to see the tiny percentage of their income that they give back to the community shrinking again.

For the record: I am simply more interested in seeing the truth of the matter, whatever form that may take, than seeing these ghosts of false stories floating around.If the people promoting them believe they have evidence to support them, then it would only be rational to show it.

It would seem to me that you have already decided on what is the truth.

Well if the evidence stacks up against the stories and nothing supports them, what would you suggest - I blindly still believe them to be true?These stories have been debunked as false for some time now and not only has ahogday provided evidence above for the issues in this thread, this forum has several more evidential posts from him.

merig wrote:

I certainly cannot see any reason to let up on the protests just yet

You only need go and look - if you have evidence either proving these stories as true or evidence countering what ahogday has posted - then by all means, let's see it.
There really is no point in endlessly chanting "Autism Speaks baaaad, Autism Speaks baaaad, Autism Speaks baaaad", now is there?

Quote and link from Autism Speaks answer to the autism community that they are not funding a prenatal test for autism, along with many other issues that are clarified and addressed in the linked interview with Autism Speaks, including an apology to those in the autism community that may have been offended in the past from the organizations efforts, and in addition, clarification of what the organization defines as cure:

"4. A growing body of scientific research suggests that we are rapidly nearing the development of an amniocentesis test to detect autism, much like the procedure currently used to detect Down’s syndrome. Does funding provided by Autism Speaks in any way enable the development of such a test? If a prenatal test for autism was developed, does Autism Speaks believe that it should be made available to the public?A: Autism Speaks is not funding any research to develop a prenatal test for autism. That is not our goal. The genetic research Autism Speaks has funded is aimed at finding biological causes, as described above."

Well surprise surprise, their very generously remunerated PR dept didn't answer the question.

Because I don't believe a word these snake oil salesman say I tried to look up what research they are funding. Unfortunately their website states that their "legacy organisations are not included."
These legacy organisations are better known to us as CAN, ACRE and NAAR. So could it be that Cure Autism Now are developing a prenatal test for autism so that autismspeaks are technically correct with their answer. Sneaky sneaky.

Autismspeaks have also seeded many research organisations around the world which have now moved on and are independent of them. So yet again autismspeaks might technically be right but it was them that planted the seeds.
It would be interesting to see how many of the American publics money goes abroard each year.

Aghogday, how many times have you posted that link to autismspeaks idiosyncratic definition of cure. In all that time autismspeaks have not put any clear explanation of what they mean by cure on their own website.
How are visitors to their website supposed to know that they are not looking for a cure?

Autism Speaks CEO is paid at or below the median compensation for CEO's of similar large sized charitable organizations in the Northeast, per the Charity Navigator's most recent 2010 analysis of CEO compensation, per the quote and link below.

Because the bloke in the next office block earns an exhorbitant salary so I must have the same, is not a justification.
It's an excuse.